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Recurrence symptoms: swelling and heaviness?
Hi all, Has anyone experienced mild swelling or a feeling of heaviness in the breast as a symptom of local recurrence? No pain, redness or itching, but something just feels “off”. Laying on my back feels like something kind of heavy it sitting on my treated breast. Already have yearly mammo and US next week and will…
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Lobular Stage IV Imaging Issues - I Know I’m Not Alone
Hi, everyone. I was thinking about starting a Facebook group for those of us who have so many issues with imaging. I got some feedback from others that they did not want me to start a separate group, so I am starting a group here. Below is my post on Facebook so that you can get a sense of the imaging issues I've had.…
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Curious about time to recurrence for Lobular (ILC)
Hi there fellow lobular thrivers, I was basically a De Novo Stage IV as I had progression shortly after I was diagnosed when I had just started neoadjuvant chemo. But I’m curious how long it was for others between their first diagnosis and recurrence to a distant (non-breast) metastasis. My theory is that the statistics…
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I am lost and scared that my next option is chemo. Emotional Yo-Yo and I have chemo PTSD
Hi there i just need to vent my fears. Not even 2 years with MBC and i am about to quit all treatments. Emotional Yo-Yo takes tall. Back in 2016 chemos were rough but i was going for the win. But this time around is different. There is no end of treatment and there is no win per se. I am lost and scared that my next option…
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Trials or other treatment options
Hello everyone, I was diagnosed with stage 3 ILC in Feb 2023. Since then I've done chemo (AC-T), radiation, endocrine therapy and just recently started Verzenio. I want to do everything I possibly can to reduce the risk of recurrence. Is there anything I should be considering as well as the above? Thanks!!
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Not dx with stage IV but feel it's coming
In short, I had a CT scan in August that showed a partially blocked ureter, a slight swollen kidney, bladder wall thickening, slight ascites, and my ovaries were hidden because of bowels but looked suspicious. The CT was to rule out a bump I felt in my upper adoment that my MO thought was nothing. It was nothing. But like…
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Recurrence after nearly 6 years
Just processing this new diagnosis. Five and a half years out from mastectomy, Had Stage I lobular as well as a small ductal tumor in right breast. Lump in armpit, took me seemingly ages to get a biopsy, which I had yesterday. Lobular cancer again. On some level I knew it wasn't the "scar tissue" people kept telling me it…
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New here, found out 4 days ago MBC
Hi all, I've written long posts on other discussion threads, but I'll keep it short here. I feel like I'll get more responses at this board till I know more about my dx and what other threads I need to check. I was dx 4 days ago with lung/abdomen and probably ureter mets. PET scan revealed. I'm not ready to hear stats…
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Imaging Tests for Lobular Breast Cancer
Imaging Tests for Lobular Breast Cancer Nov 9, 2023 Maxine Jochelson, MD, explains the imaging tests for lobular breast cancer, as well as why lobular disease is harder to see on mammograms. Lobular breast cancer is cancer that starts in the lobules, the glands in the breast that produce milk. Lobular breast cancer is the…
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Newly diagnosed HR- HER2+ with questions
Hi everyone - I was just diagnosed with HR-/HER2+ IDC/ILC, and have been reading up in these forums, seeking wisdom from people who have already been thru this. I have a couple questions I haven't been able to find answers for: 1. Is permanent chemo-brain inevitable (eg from TCHP or AC-THP)? Some of the discussion forums…
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Re-excision and surprise DCIS near ILC tumor
Hi friends, I had lumpectomy surgery last week and rec'd pathology back. Some mixed news! Good margins on the 5 mm tumor, and no lymph node involvement! That is wonderful news! However, they found DCIS in one of the margins. Surgeon recommends removing that, too. Maybe about 1 mm in size. She said some people radiate that…
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Newly Diagnosed with ILC
Hi everyone, it’s still feels strange to say that I have breast cancer. I’ve had a long journey with breast screenings, biopsies and surgeries. In 2017 I was diagnosed with LCIS which I was told was not cancer. I was given the option of preventive mastectomy or the watch and wait option as I had no genes for cancer,…
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Has anyone here had mixed ILC/IDC which is HER2-positive?
Just curious. I had ER- PR- HER2+++ with mixed ILC/IDC.
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ILC Stage IIIa but history of heart attack and stroke
Hello, all. I hope this is the right area to post. I had ADH removed in 2013 and am doing well. My mother is 81, had a heart attack in 2006 (two stints), and a stroke last year that left her with moderate receptiove and expressive aphasia. She has a MUGA (nuclear heart scan) next week so the oncologist can determine if her…